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  会員専用

• ホーム
• 51巻11号
• 臨床神経, 51：1024−1026, 2011
• 51巻11号目次

＜シンポジウム18―2＞神経難病患者の総合的支援

神経難病のQOL

小森　哲夫

国立病院機構箱根病院〔〒250―0032 小田原市風祭412〕

Life quality is various among patients. In this article, it is shown that several progresses of both physical and psychological care for those patients during resent 15 years which we have had Japanese National Project for the quality of life in intractable diseases. Of course total cure of the disease is the best for the patients, but the second best is continuous better patient care. Total respiratory care of amyotrophic lateral sclerosis including noninvasive positive pressure ventilation and systematic approach of respiratory rehabilitation are good examples of better physical care. The approach with SEIQoL-DW is another good trial to evaluate and maintain their psychological condition. These should be also useful to another intractable diseases such as multi-system atrophy, spinocerebellar atrophy or Parkinson disease. Long term contribution of multi-disciplinary care team of individual patient has to be needed to make the better effort for the patient support now. We should have more options of treatment, rehabilitation or social life support those with which the patients could decide to have their favorable life with intractable disease.
Full Text of this Article in Japanese PDF (228K)

(臨床神経, 51：1024−1026, 2011)
key words：難病，生活の質，筋萎縮性側索硬化症，多専門職種，療養支援

（受付日：2011年5月20日）